Dear People at The Rubins

Dementia with Lewy Bodies
by
Gourete De Sousa Libanio Broderick

Editor's Note: We at therubins recently received the following 2 e-mails from Gourete De Sousa Libanio Broderick. We are very thankful to her for allowing us to reproduce these e-mails so that our viewers become better informed about Dementia with Lewy Bodies. It is a magnificent story that she tells and an inspiration to all of us who have read it.
www.lewybodydementia.org

There is also a website owned & operated by Ann Hildegard. To find out more information e-mail her at:
LBDcaregivers@yahoogroups.com

E-mail # 1

Dear People at The Rubins.com:

As I'm sure you are aware, Alzheimer's disease is the leading cause of dementia among our aging population. The second leading form of dementia is called Dementia with Lewy Bodies. (hereafter referred to as LBD). Unfortunately not many people, including our Doctors, are aware of this disease. I certainly had never heard of this disease prior to my Mother being diagnosed with LBD over a year ago.

LBD is a neurological disorder that includes symptoms associated with Alzheimer's disease, clinical features of Parkinson's disease, fluctuations in cognitive performance and, finally, visual and/or auditory hallucinations.

Most importantly, people living with LBD are especially sensitive to neuroleptic (anti-psychotic) medication. The administration of these drugs cause further deterioration in our loved one's with LBD and may, in fact, be fatal. Having said this, the first response of far too many Doctors presented with a LBD patient in Hospitals, Emergency Rooms, Assisted Living Facilities and Nursing Homes is to prescribe these very medications. Doctors do so because they have never been made aware of LBD during their medical training and practice. I am working toward changing the needless suffering of LBD patients.

Our "Baby Boomers" are getting older and will need the expertise of our Doctors and Scientists. My question to you is: What can your organization do to make others aware of Lewy Body Dementia and ensure that this generation (unlike my Mothers) is protected from inaccurate diagnosis and is given proper therapeutic treatment that excludes medications that may be fatal?

In closing, I would encourage your organization to make everyone aware of Lewy Body Dementia - most especially those in the medical field. I belong to a World-Wide group of LBD Caregivers whom, like myself, are very interested in receiving a response from you. I await your response and thank you for your time.

Regards,
Ms. Gourete Broderick

Please add this web site and Caregivers Group links to your site:
www.lewybodydementia.org

There is a website owned & operated by Ann Hildegard. To e-mail her and get more information on this matter go to:
LBDcaregivers@yahoogroups.com

E-mail # 2

Olivia and Lewy

For as long as I have known my mother, Olivia Alves De Sousa Libanio, she has been a strong and independent woman. That is until Lewy came into her life about 2 years ago. What a strange sounding medical condition she was diagnosed with, I thought. Who would name a disease after a man named Lou! I learned in a hurry that I had a lot to learn and that Lewy and I were going to get to know a lot about each other.

My Mother is now 67 years old and here's how it all started. A few years ago, we noticed that she became forgetful every now and again but this didn't seem unreasonable considering her age. It's normal aging, I thought. Then there was the day that my Mother forgot she had just greeted her son and we rushed her to the hospital. We had no idea what was going on other than her being completely confused. The Doctors suggested that she might have had a small stroke. How shocking this was to us but upon reflection, I wish that this were true.

Within the next few months, my Mother had many episodes of confusion then seemed to snap out of it without explanation and continued to engage in life. At one time, we thought she was doing this to get attention and had a hard time trying to explain her symptoms to Doctors during appointment when she seemed to be her normal self or with other family and friends. Before too long, my Mother started having problems with mobility, tripping over her own feet, unable to move in mid-stride or just plain falling down. What was going on? We knew something had turned the corner when she fell down the stairs and fractured her collar- bone. Not one week later she fell down again and had a hair- line fracture near her elbow.
She had an appointment to see a Neurologist due to her confusion (her Mother had Alzheimer's and we thought she may have it too) but her falls confirmed the diagnosis of Lewy Body Dementia. Whew, we thought…thank God it's not Alzheimer's after all! Our relief was short lived however, once we learned what a diagnosis of Lewy Body Dementia meant. I had never heard of this Lewy before and soon learned that no one else, including those in the medical field, knew very much about Lewy either.

So here's the medical explanation: LBD is a neurological disorder that includes symptoms associated with Alzheimer's disease, clinical features of Parkinson's disease, fluctuations in cognitive performance and, finally, visual and/or auditory hallucinations. Did this diagnosis make sense or what! This explained the cognitive confusion and why she seemed to have good days followed by too many terrible ones. This explained why she seemed so unsteady on her feet and the constant falls. This also explained why she started describing trips she swore she took or conversations she had with people who weren't there - hallucinations.

It's been over a year now since my Mom has been taking medication that helps those with Alzheimer's and Parkinson's. She hasn't had to take any anti-psychotic drugs for the hallucinations but we know it's coming. People with Lewy Body Dementia are extremely sensitive to anti-psychotic drugs but are too often prescribed these drugs to calm their aggression and/or agitation - something we all need to look out for. There is no cure for LBD - no magic pill or therapy. It's one day at a time for us all, making my Mom as comfortable and as happy as we can. To say that my Mother is no longer the same woman we all once knew is to put it mildly but she is still our Mother and my Father's wife. We continue to care for her today and love her and when she smiles it makes all the hard times worth it. I love you Mom!

Please follow this link to learn more about Lewy Body Dementia:
www.lewybodydementia.org

Gourete De Sousa Libanio Broderick
May 2003

For some other articles on Alzheimer's Disease

FOR AN INFORMATIVE AND PERSONAL ARTICLE ON PRACTICAL SUGGESTIONS WHEN SELECTING A NURSING HOME SEE OUR ARTICLE "How to Select a Nursing Homes"

http://www.therubins.com

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